Against Medical Advice...

In spite of an outpatient pharmacy versus insurance battle, delays in getting Bobby's final chest xray, and a very slow nurse, yes...

We are finally home!

Hallelujah!

Even Bobby was happy to leave the hospital - he was grinning from ear to ear when we put him into his car seat.

Here are the before and after pictures so you can see for yourself!

Before leaving the hospital...

Get me OUT OF HERE!!!

After leaving the hospital...

There's no place like home....

After we made a batch of his new formula (Vivonex) - clearly THE stinkiest formula ever invented - I sat down to sort through his myriad follow up doctor's appointments and new medications. Let's just say, Bobby's got a steady date with the medical professionals at Children's Memorial Hospital on a near weekly basis, from now until the end of June. It's almost like we never left the hospital. Oh yeah, except that the food and sleep accomodations here are nicer :)

For the medically un-initiated, here's a view of what it takes to keep my little man alive:

 

• Coumadin (Warfarin) 3mg tablet – dose ½ tablet, 1x/day (nighttime) – to prevent blood clots, which are common yet very serious after the Fontan heart surgery
• Augmentin (Amoxicillin-Clavulanate) 600-42.9 mg/5ml – dose 2.4ml, 2x/day for 7 days – for the infection in Bobby's central line
• Lasix (Furosemide) 10 mg/ml – dose 2ml, 2x/day – diuretic to help Bubs rid excess fluid
• Sildenafil 2.5 mg/ml – dose 3.2 ml, 2x/day – for pulmonary hypotension
• Aldactone (Spironolactone) 5 mg/ml – dose 2.5ml, 2x/day – diuretic to help Bubs rid even more excess fluid
• Prilosec (omeprazole) 2 mg/ml – dose 5ml, 1x/day (nighttime) – for GERD
• Miralax (Polyethylene glycol 3350) – 8.5g, 1x/day (as needed) – for constipation
• Triamcinolone Acetonide 0.5% cream (for g-tube site) – 2x/day for 2 weeks (as needed) –  for gtube skin health
• Children’s Tylenol  – as needed – for when mamas can't figure out what else to do with an unhappy, hysterical boy
• Pediatric Vivonex  – medically necessary, prescription only, low-fat, amino acid based infant formula used to treat chylothorax
• Multivitamin / Vitamin C / Probiotics –  with all the other meds in his system, we figure these can't hurt him any
• Prune Juice  – dose 20ml, 2x/day – for constipation (mine, his, ours)

That said, it should be noted that immediately upon returning home, the Mamas had a serious talk with Bobby about his physical limitations during his post-heart surgery recovery. Specifically, the discharge notes state, "Avoid lifting under the arms, avoid heavy lifting, avoid support body weight with arms for 6 weeks. No rough play, contact sports or PE class for 6 weeks."

Tonight, Bobby decided to revise the discharge instructions. He immediately laid on his chest, pushed up to sitting, then surprised both his Mamas during a check at bedtime, when we found him doing this:

It's my discharge day, and I'll do what I want to!

This Bobby's BACK!

Discharge Pending

All things are a go for discharge today. The doctors are pleased with Bobby's progress, and we are waiting on a final chest xray and discharge paperwork. Bobby's also going to have xrays to check his cervical spine for atlantoaxial instability, which is a point of vulnerability in kids with Down Syndrome. Mama A is manning the hospital front, while this Mama is working today.

Here's a picture of our silly boy who has happened upon a way to sleep in his comfort position, while not putting excessive pressure on his chest. He is a little McGyver!

We're all looking forward to being home!

Happy Mother's Day!

Today's the day when we honor the Mothers in our lives. Whether it's your mother, a mother you know, or if you yourself are a mom. Today is the day that we say "Thank You." Thank you for everything you do, thank you for giving us life, and thank you for being a mom.

In honor of all the amazing moms… around the world... Happy Mother's Day!

Love, Bobby and his Mamas

Bobby "Grand Funk Railroad" Grunsted

We're an American band.

We're coming to your town, we'll help you party it down.

We're an American band.

Come On Baby, Do The Locomotion!

Bobby continues to do well, and is more active every day.

On Thursday, Mama A and Bubs had their first play session on a floor mat in his room. We were pleasantly surprised to see that he was able to butt scoot! We were afraid that this particular skill would take a while to come back. Turns out, the boy can do what he loves best! Yay for locomotion!

Bobby is also becoming more communicative as the days go on - he signed music and dog yesterday, and verbalized "'Cout" when referring to his favorite puppy toy, Scout.

We're on track for a discharge on Monday. They are tweaking his medications for a more home-friendly regimen, and by all accounts, things are looking good.

Got the Music in My Soul

Moving Right Along...

Bobby had a busy day yesterday. They started him on IV vancomycin antibiotic to kill the infection they discovered in his central line. They removed the central line, put in a new IV, and removed his temporary pacemaker wires. He had a physical therapy session, and an occupational therapy evaluation, since he doesn't seem to want to use his right hand.

This Mama received a visit from the hematology nurse practitioner to discuss the outpatient care involved with Bobby's new blood thinner. We are no stranger to Coumadin, since he was discharged on it after his last heart surgery. Basically, maintenance will involve weekly INR blood clotting checks for a while, and we'll have to be extra careful if he gets injured or bleeds. It was a little frightening to hear the nurse practitioner describe the symptoms of a stroke, and that we'd have to look out for one if Bubs has any kind of head injury.

Today, we received good news during rounds. The kind of bug that Bobby caught in his central IV line can be treated with gtube antibiotics! This significantly shortens our hospital stay, and means we won't be sent home with a PICC line to administer IV antibiotics! Instead, they will continue the IV antibiotics inpatient for 7 days (5/9/11 is day 7), and then he can take gtube antibiotics after that. They are also now talking about a possible discharge of early next week. Yay!

Miss Elizabeth, the music therapist, also paid Bobby a visit today, and left a tambourine a drum, and two shakers. We also received a lovely fleece blanket from Miss Catalina of the hospital Child Life center. We love Miss Catalina! The music instruments are a welcome addition, since Bobby is feeling better and starting to get r.e.s.t.l.e.s.s. (as are the Mamas :)

Here are a few picture/video tidbits from the past couple of days...

Mama A singing to Bobby (and Bobby's response)...

My little rocker...

Ladies, ladies... there's enough of me to go around...

Arghhhh

Bobby has been fine since the drama of yesterday morning.  We've had no more desats and, overall, had a pleasant day.  But, we found out last night that he  has an infection from his central line (which is used to draw blood/give IV medication).  That means we're in the hospital for more time as they give him IV antibiotics.  It will be a couple of days before they can specify how much time - we may go home on oral antibiotics or even with an IV.   Shoot.  Darn.  and Heck.

Uncertainty abounds

The cardiologist just stopped by to report that Bobby's heart did not go out of rhythm this morning - it was a false reading.

However, Bobby did have an oxygen desaturation into the 70s that caused him to turn blue.  They originally thought it was because of the arrhythmia, but now they don't know what caused it.  They have taken blood cultures to check for a virus and are going to do an echocardiogram later today.

On a good note, the chest tubes are coming out sometime this morning.  They are likely causing Bubs some pain as he moves around so it will be good to get rid of them.  They are also starting to wean him off of his many medications. 

As for Bubs himself?  He's happily playing with his zhu zhu pet and puppy Scout.  He's such a sweet boy.

Scary morning

Bobby's heart went out of rhythm this morning.   He had what is called v-tach, which is a fast heart rhythm that originates in the ventricle.   The emergency team had to be called and there were upwards of 10 people in his room, along with the defibrillator machine (paddles for shocking the heart back into rhythm).  Fortunately, he got himself back into rhythm without having to have much intervention.

The doctors still don't have a theory for why he went out of rhythm.   We'll learn more today.

The Road Back

Bubsy had another good mood day.   He got through the night without the help of any drugs and was generally in a mellow mood all day.  Nice for Bubs and nice for mamas.

We're getting close in terms of the removal of his chest tubes.  He had much less drainage today than he did yesterday.  Hopefully one or both will come out tomorrow.  

He started on a blood thinner (Warfarin).  This was expected as there is a chance of clotting around his Fontan shunt.   He will likely be on the drug for at least a year and maybe longer.   Its a bit concerning because he will bleed more than a typical child when he's hurt...and of course a three year old is going to have some skinned knees.

We started physical therapy today.   We requested the consult as Bubs is having trouble sitting up on his own, much less butt scooting.   I didn't expect the surgery to cause this much regression, but then I've never tried to sit up with a broken sternum before either.   In addition, he has lost almost two pounds in the last two weeks which has to deplete his strength.  All that said, with a little help, Bubs sat up for two 15 minute sessions, a very good start on the road back to wellness.

Our evening ended with a few songs and a snuggle with Mama V...

Staying the Course, of course, of course

Bobby had a good afternoon yesterday, and since he had a dedicated nurse, the Mamas went home last night for some respite in the form of reality television (Mob Wives), a home meal, and a chance to sleep in our own bed! Ah, the simple, trashy pleasures in life...

This morning's rounds brought news of Bobby's increased chest tube drainage, which had been slowly declining, and also concerns about his kidney values. They discontinued the IV motrin, since that can adversely impact the kidneys, and the pain control team should be paying us a visit to discuss alternatives. The left chest tube drainage is becoming a bit cloudy again, in spite of Bubs being on the new formula, but the docs want to wait a bit before deciding to discontinue Bobby's gtube feedings (which, I'm guessing, might mean they would then put him on IV feedings... or TPN, which is not ideal). For now, we continue to wait for the chest tubes to stop draining and see what happens with the chylothorax.

Bobby's had a great day today. He was given the chloral hydrate last night, and got a good night's sleep, as we did. He's back to a much more energetic, smiling and happy Bubs, which is lovely to see. His day nurse is great - she created a makeshift mobile of Bobby's toys out of a cord hung the length of his crib, and Bobby's had great fun batting at the toys with both hands and feet. We also blew bubbles, and he's now entertaining himself with his new Zhu Zhu pet from his buddy, Sami. Oh, almost forgot to mention that last night, Bobby also decided he was sick of the IV in his hand, so he ripped it out. They decided not to replace it, which is a good thing all around, so he now has the use of both hands! Yay! I told the nurse today that Bobby will let us know when he's ready for the chest tubes to come out :)

Below are a couple of videos of my silly boy's shenanigans...